This page describes how AIS and related conditions have been covered in
printed matter (articles and books, including newspapers and popular magazines).
It shows how writers outside the medical profession (social scientists, social
psychologists, journalists, patients) perceive AIS and similar intersex conditions.
Heavy-duty articles in medical and other academic journals are, in general,
not covered here (apart from a few key academic ones); references to these
can be found at the foot of our pages covering specific medical topics.

Those articles/books to which the support group and/or its members contributed
(or where they took part in subsequent discussions about the work) are indicated
with an asterisk (*) in the page index below.

For details of activities undertaken by group members that are not related
to the printed word (i.e. talks, conference presentations, radio and TV broadcasts,
and various other projects/campaigns) please refer to the Raising
Awareness page.

Since the 1950s there have been many papers in medical journals on the clinical
features, endocrinology and genetics of AIS, often under its old name, Testicular
Feminization Syndrome (Testicular Feminisation Syndrome). It is often described
there as a "well-known", or "well-studied" condition, but in spite of this
the condition was virtually unknown to the world at large (and to many diagnosed
AIS patients!) until the early/mid 1990s. Until then, most of the research
(and hence most of the published material on AIS) had been on the aspects
that doctors are interested in and which is only of help to the patient
in as much as it aids the diagnosis process. The psycho-social aspects of
AIS (truth disclosure, effects of secrecy, lack of psychological counselling
etc.) and the outcome of various treatments for vaginal hypoplasia from the
patient's physical and psychosexual point of view, had been very much under-represented,
or even virtually ignored, in the medical literature. Most of the published
literature had therefore been of little practical use in helping patients
deal with the condition and, moreover, had been written on the erroneous assumption
that patients would never read it.

At the time the support group was formalized in the early 1990s there had
been a few papers in the literature devoted to the question of truth disclosure.
Their listing below does not necessarily indicate that the support group
endorses what they say. Some of them are good; some of them use some rather
unfortunate language. They are mentioned here to indicate what we were able
to find at that time:

The Whole Truth and Nothing But the Truth? by Minogue et al; 'Case
Studies' in Hastings Center Report, Oct/Nov 1988. A philosophical debate
covering opposing viewpoints on the question of truth disclosure in AIS.
Click here to see a transcript
of the article (or it may be possible to access original article via http://www.thehastingscenter.org/publications.html
?).

Until I Met Mary by Michael Green and Benjamin Horowitz; 'Reflections'
in Journal of General Internal Medicine, Vol 4, Nov/Dec 1989. A doctor's
account of his personal conflicts in deciding whether to disclose the truth
to a patient. Click here to see
a transcript of the article.

Helping a Child to Understand her Own Testicular Feminization
by Janet Goodall; The Lancet, (337), Jan 5, 1991. A key paper by a paediatrician
(now retired) suggesting a phased approach based on developmental milestones.
Click here to see a transcript
of the article. 1991 may pre-date launch of online version of The Lancet
but the paper might be available via http://www.thelancet.com/journal?

Does She Need to Know.....? by Dr. Elizabeth Scott; GP Magazine,
19 Feb 1993. Click here to
see a transcript of the article.

In the past, patients' requests for the full details of their condition
and to be put in touch with other patients would often be met by evasive answers.
Most patients would have no choice other than to hot-foot it round to their
nearest medical library or academic bookshop; where they could read about
themselves being "genetic males" (note the use of 'male' as a noun)...., about
being "male pseudohermaphrodites" or "hairless pseudo-females", about having
"eunuchoid extremities" and having body parts (e.g. nipples) described
as "sexually infantile"...., about having been "castrated"...., etc., and
could see pictures of their fellow intersex patients, standing naked against
a measuring grid with just their eyes blacked out.

We have to mention a lone voice in the wilderness here, in the form of Dr.
Garry Warne, a forward-thinking paediatric endocrinologist at the
Royal Melbourne Children's Hospital in Australia who has had a long-standing
and compassionate interest in AIS, and who, way back in 1986, had prepared
a set of user-friendly typewritten 'Notes for Parents/Patients on AIS', see
below.

In spite of the stigma caused by the way in which our condition has been
presented in the medical literature, it has often been the only way in
which many patients could get proof that they were not the only one on the
planet affected by this 'unspeakable' condition. At the time the UK support
group was formalised in the early 1990s, a few enlightened researchers
(mainly social scientists), who were starting to evaluate the psycho-social
aspects of intersex conditions like AIS, were pointing out that these conditions
were "humanly possible but socially unthinkable".

In 1990, social psychologist Suzanne Kessler
reported that:

There are no published studies on how these [intersexed] youngsters
experience their condition and their treatment by doctors.

The UK support group has prepared a precis of her article (The Medical
Construction of Gender: Case Management of Intersexed Infants, published
in Signs, the Journal of Women in Culture and Society, Autumn 1990) from which
the above quote is taken. Click here
to see this precis (or it may be possible to access original article via http://www.journals.uchicago.edu/signs/home.html
?).

In 1993, the editorial to an articleThe Five Sexes: Why Male and Female are Not Enough by Anne
Fausto-Sterling (The Sciences, March/April 1993) read:

....As it happens, the physiological reality [that a
vast range of external sexual characteristics can occur] is almost unknown
outside medicine - and that fact alone is symptomatic of a society unwilling
to accept the truth about its members.

In 1994, Morgan Holmes
published an important article Re-membering a Queer Body, about the
social attitudes that underpin the treatment of infants with 'ambiguous' genitalia.
See our Debates/Discussions page
for a transcript of the article and some subsequent discussions about it.
For other, more recent papers by Morgan Holmes see references at foot of Genital
Plastic Surgery and Obtaining/Facing Diagnosis
pages. Morgan Holmes has her own website (see Links
to Other Sites page).

ALIAS Refs:"A Mother's Story" in ALIAS No. 7"Learning by the Book" in ALIAS No. 9"Reading the Words" in ALIAS No. 9"Hearing the Words" in ALIAS No. 9"Saying the Words" in ALIAS No. 9"The Power of Language/Culture" in ALIAS No. 9

The first occasion on which the concerns of an AIS patient were heard
in the medical literature was probably the anonymous article Once a Dark
Secret in the British Medical Journal (Feb 1994) in which a young woman
talked about the secrecy that had surrounded her condition. This prompted
two response letters in the April 1994 issue of the journal. Click here
to see a transcript of the article followed by the two response letters.

A few years after the UK support group became formalised, an article titled
Medical Ethics and Truth Telling in the Case of Androgen Insensitivity
Syndrome by Anita Natarajan appeared in the Canadian Medical Association
Journal, 154 (4), 15 Feb 1996, and caused a lot of negative reaction within
the group. See Debate/Discussions
to read the journal article and subsequent discussions.

Robert Pool's book Eve's Rib - Searching for the Biological Roots of
Sex Differences (Crown Publishers. New York, 1994) was written before
the support group became known or started to wield any influence, but it does
contain a quite detailed account of the biology of AIS using the story of
an Olympic athlete Maria Patino (María José Martínez
Patiño) who has AIS. The support group used this as the basis for an
article called Maria's Story to send out to enquirers since it seemed
to be good material for helping present the biological facts to a teenager.
Click here to see a transcript of
'our' article.

Drs. Garry Warne (Royal Children's Hospital, Melbourne, Australia) and Milton
Diamond (Pacific Centre for Sex and Society, Hawaii) have addressed the concerns
of intersexed patients in a number of research papers (see Research
Studies and Genital Plastic Surgery).

Dr. Warne has also written a fairy tale called The Baby Who Was
Different to help parents explain unusual genitals to a very young child.
Click here to see a transcript of
the fairy tale. He and his colleagues have also produced videos to help families
to cope with this sort of situation.

In around 1996 Dr. Warne worked up his Notes for Parents/Patients on
AIS into a proper booklet which was published in 1997 and is available
from the UK support group. See Raising
Awareness for details of this and other involvement by Dr. Warne in support
for patients with AIS and related conditions.

A short story called Orchids (see http://pages.prodigy.net/sullydog/archives/astory18.htm)
was written in 1998 by Karen Traviss (a UK-based journalist and public relations
director who writes science fiction as a hobby) about a woman who gives birth
to a CAIS baby and about the babys subsequent progress to adulthood.
Karen is no longer at the email address quoted in the article. She is now
at mail@karentraviss.com.

Suzanne Kessler's book Lessons from the Intersexed published in 1998
(Rutgers University Press, ISBN 0-8135-2530-6) discusses AIS, the support
group, and includes quotes from group members. Recommended reading! Some excerpts
from the book follow.

Kessler outlines the evolution of the Intersex Society of North America
(ISNA) and other groups, then says (on p. 79) :

A self-help group in England, originally for parents of children
with androgen insensitivity syndrome, eventually began to attract women with
androgen insensitivity. The Androgen Insensitivity Syndrome Support Group
(AISSG) published its first newsletter, ALIAS, in early spring 1995 and listed
goals similar to ISNA's: to reduce secrecy and stigma surrounding AIS, to
develop enlightened support within the medical community for young people
with AIS and their parents, and to provide a network of information (including
personal contacts) for those with AIS. By mid-1996, Sherri Groveman, a member
from the United States, had publicized the existence of AISSG by writing directly
to over 300 physicians and scores of organizations and by posting notices
in medical journals. The result was several new calls every week.

On p. 97 (after talking about parents not being as upset about variant genitals
as doctors like to make out, especially in the face of other medical problems
in some intersexed children) she says:

One might argue that parents express so little concern about
their interesexed children's genitals because that part of the problem was
already taken care of by the surgeons. It is at least possible, though, that
some parents considered their child's genitals the least of their problems,
in spite of all the physicians' allusions to the parents' embarrassment. How
astute are physicians in assessing what is of greatest concern to their patients
and families? Women diagnosed with androgen insensitivity syndrome(AIS)
report being more preoccupied with their lack of pubic hair, their memories
of having been lied to and put on display for medical students, and their
difficulty in talking to relatives who they suspect might also have AIS, than
what they call "non issues" such as XY chromosomes, testes, and infertility,
the features of their condition focused on by medicine and psychology.

She discusses how the rather aggressive approach of some other intersex
groups has only had limited success in influencing the medical profession,
and in footnote 26 (to a comment on p. 86) says:

Endocrinologists and gynecologists who attended The Royal Society
of Medicine symposium on androgen insensitivity syndrome (AIS) in 1995 [see
History of the Group] wrote letters praising
the presentations of representatives from AISSG and indicating how impressed
they were with the organization's aims (ALIAS No. 3, Winter 1995). This contrasts
with the cold shoulder that representatives of _______ [another organisation]
received at a Mt. Sinai School of Medicine conference on Pediatric Plastic
and Reconstructive Surgery 16 May 1996.

On p. 123 she says:

Members of the Androgen Insensitivity Syndrome Support Group
have had some success in getting prominent endocrinologists to consider the
organization's recommendations about a different management philosophy based
on a more compassionate understanding of their patients and a more radical
formulation of gender. One physician described their literature, which was
critical of the medical management of intersexuality, as "remarkab[ly] illuminating".
Even after expressing some qualms about accepting a third gender (which AISSG
does not advocate), he ends with: "What is certainly gratifying about these
writings is the trend towards fully [sic] and more open discussion of the
complex issues involved in abnormal genital development".

In footnote 96 (to a comment on p. 129) she says:

At the 1996 Lawson-Wilkins Pediatric Endocrinology Conference,
Charmian Quigley, a highly published researcher and pediatric endocrinologist,
gave credibility to positions taken by the Androgen Insensitivity Syndrome
Support Group by distributing the group's literature.

Alice Dreger's book Hermaphrodites and the Medical Invention of Sex
(Harvard University Press, 1998) also discusses AIS and paternalism (truth
withholding) using quotes from support group members. Recommended reading!

1) The Winter 1998 issue (Vol. 9 No. 4) of the Journal of Clinical Ethics
was guest-edited by Dr. Dreger (see above) and devoted an entire issue to
the management of intersex (including an article by the founder of our US
group and titled The Hanukkah Bush: Ethical Implications in the Clinical
Management of Intersex).

Other articles in this issue are: Intersexuality: What Should Careproviders
Do Now by Howard G. Howe, A History of Intersexuality: From the Age
of Gonads to the Age of Consent by Alice Domurat Dreger, Management
of Intersex: A Shifting Paradigm by Bruce E. Wilson & William G. Reiner,
10 Commandments by Helena Harmon-Smith, Betwixt and Between: The
Past & Future of Intersexuality by Robert A. Crouch, Surgical Progress
is Not the Answer to Intersexuality by Cheryl Chase, A Surgeon's Response
to the Intersex Controversy by Justine Marut Schober, Pediatric Ethics
and the Surgical Assignment of Sex by Kenneth Kipnis & Milton Diamond,
For the Sake of the Children: Destigmatizing Intersexuality by Sharon
E. Preves, Legal Trends in Bioethics by Heide Foster.

You can get this issue from the US publishers, University Publishing Group,
by calling 301 582-2200. They take credit cards over the phone. Or you can
email via: orders@clinicalethics.com.
Cost is $35.00 plus ship/handle.

2) Intersex in the Age of Ethics, a book edited by Alice Dreger containing
the above articles and others, is also available from the same publishers
(ISBN 1-55572-100-1 paperback, $19.95 plus ship/handle) using above phone
no. or by email at orders@upgbooks.com.
For further information on the book see www.upgbooks.com.

Some marketing blurb about the book:

'Intersex in the Age of Ethics' marks the first time an entire
volume has been dedicated to the exploration of the ethics of intersex treatment.
It could not be more timely; professional conferences, gender clinics, and
the popular media are abuzz with the controversy over how medicine and society
should handle intersex and intersexuals. The volume will provide some much-needed
perspective. The writings approach the issue of intersexuality and its treatment
from numerous perspectives, including the personal, ethical, clinical, legal,
anthropological, historical, sociological, and philosophical. -- Alice Domurat
Dreger.

The range of ethical issues that arise in regard to the treatment of intersex
infants, children, and adults is richly representative of the clinical healthcare
ethics generally. By incorporating the perspective of patients and their stories
in this account, however, 'Intersex in the Age of Ethics' does more than introduce
the question of healthcare ethics in microcosm. It also leads the reader to
examine the effect of ethical reflection on the lives of patients.

Unlike many collections of essays, this one hangs together very well both
for reading and for teaching. 'Intersex in the Age of Ethics' is a model,
in both senses of the word, of what thoughtful healthcare ethics reflection
can accomplish. It embodies a conceptual model of ethical reflection that
leads the reader to pose the right questions and to respond to them with patients'
lives in mind. And it is a model in the evaluative sense--excellent, admirable,
and deserving of imitation. -- David T. Ozar, PhD, Loyola University of Chicago.

In May 1999, Dr. Peter Broks had an article on AIS called Trust Me -
I'm a Patient published in 'Wavelength' (http://www.uwe.ac.uk/facults/fas/wavelength)
Issue No. 23, May 1999. This is a newsletter of the BA course in Science,
Society and the Media at the University of the West of England. Peter
is a parent member of our group who lectures on this course and has a research interest
in the public understanding of science. His (then 12 year-old) AIS daughter
had grown up in an atmosphere that had been completely open and truthful concerning
her AIS. The article is available as a transcript on
this site. For further information you can email the author Peter.Broks@uwe.ac.uk.

Caroline Hawkridge, a UK-based health education specialist and writer, worked
with the various support groups, including AISSG, in writing a book The
Menopause, HRT and You, which was published on 26 Aug, 1999 by Penguin
(ISBN 0-14-027261-5, £7.99). It covers HRT in young women and in women
with unusual reproductive conditions. See Literature
page for details of how to obtain this and other publications from the support
group.

A group member told us how, a few years previously, she had made contact
with the US branch of the support group:

I was reading the Sunday NY Times when I spotted an article
by Angier about intersex conditions [Intersexual Healing: An Anomaly Finds
a Group, NY Times, Sunday Feb 4, 1996]. It was the first time I had ever read
anything in mass media regarding AIS and other conditions....It was as a result
of her article that I contacted ISNA and subsequently ______ [AISSG (US) group
leader] 'found' me and here I am today.....As I recall Angier's NY Times article
was sensitive.

The following excerpt is from a review (UK Sunday Times Book Section, 7
March 1999) by David Bellamy of a new book Woman: An Intimate Geography
by Natalie Angier (Virago):

Angier's text here is the female body, its anatomy, its chemistry,
its development through life.... At last I know what little girls are made
of and how they are made of it, or at least I think I do. The boring bit is
that big girls are made of exactly the same things, and so are boys, whatever
size they aspire to be. All of us are put together in much the same way: we
consist of cells, tissues and organs. If any of these contain a certain enzyme
called aromatase (and, on investigation, most do), that tissue or organ can
produce one or more of the 64-strong family of female hormones called oestrogens.
What is more, they can make oestrogens from a whole range of raw materials,
including testosterone.....

Caroline Hawkridge tells us that:

On pages 26-35, Angier describes meeting Jane Carden, who is
full of "live-wire intelligence" and "projects a dome of charisma all around
her". Angier repeats Jane's story, including her painful discovery [15 years
previously] of the truth in a medical library, before going on to describe
how "being androgen-deaf, Jane's body took the course that a mammalian fetus
will in the absence of androgens: it chose to go girl." Finally, she describes
Jane's joy on discovering a support group in England after "15 years feeling
like an untouchable freak". She ends with a quote from Jane: "I am the daughter
my mother created. I am the woman I was meant to be."

Click here to see a transcript
of the complete coverage of Jane Carden's story in Angier's book.

You can also read reviews at www.amazon.com.
Articles about the book and related issues can be found at www.time.com.
In both cases, do a search on 'angier'.

In contrast to the sensitive approach of authors like Angier, there are
the outpourings on AIS from Ms. Germaine Greer in her book The Whole Woman.
What can we say, except see Debate/Discussions
if you really want to see how ill-informed some people can be.

Sherri, the founder of AISSG US, told us in Sept 1999 that she was working
with a friend and former law faculty colleague Julie Greenberg on a law review
article on informed consent. Julie is Prof. of Law, Thomas Jefferson School
of Law, 2121 San Diego Ave., San Diego, CA 92110. Email: julieg@tjsl.edu.
She is author of Defining Male and Female: Intersexuality and the Collision
Between Law and Biology in Arizona Law Review, Vol. 41, No. 2, Summer
1999.

This is the delightful title chosen by Robert Marion for his article (http://www.discover.com/dec_00/featvital_full.html)
in Discover magazine, Dec 2000. Marion, a US professor of genetics
tells how he fobbed off a Mexican AIS woman without telling her the truth.
As ISNA describe it in their bibliography, "Although the patient was kept
in the dark, Dr. Marion published her story for the entertainment of readers
of Discover magazine". The founder of our US group had a letter to the
editor (http://www.discover.com/mar_01/letters.html)
published in the March 2001 edition of the magazine; and a number of support
group members/sympathisers also wrote to the article's author to complain
(see Debate/Discussions).

Celia Kitzinger (a professor at the University of York, UK) published an
article Women with Androgen Insensitivity Syndrome (AIS) in a book
(Ussher J. Ed. "Womens Health: An International Reader". Pub: Leicester:
Psychological Society, 2000. ISBN: 1-85 433-308-9). The article is based partly
on material from the UK AIS Support Group's newsletter, ALIAS, and focuses
on psycho-social aspects of AIS.

In 2000 a group member was featured in Male, Female, Other (http://www.nerve.com/LeVay/intersex)
an account by Simon LeVay of "two children, born with the outward appearance
of girls, but lacking the inner passageways of either sex... They did have
gonads, though: one had a boy's testes, the other had a girl's ovaries."

In July 2000, the UK group was invited to supply an author to write a chapter
on AIS-related issues for the new edition of an endocrinology textbook, Comprehensive
Clinical Endocrinology, 3rd Edition, eds. G.M. Besser (UK) and M.O. Thorner
(US). The founder of the US group agreed to write the chapter.

The book was announced in July 2002 as follows:

I am delighted to report that Besser and Thorner's Comprehensive
Clinical Endocrinology (3rd Ed.) (Mosby) has just been published and features
a patient perspective chapter on AIS written by Sherri Groveman, Founder of
AISSG USA.

The chapter addresses the physical and emotional needs of women with AIS
and includes recommendations for treatment. While the invitation to write
the chapter made clear that it was to be limited to clinical issues in Complete
AIS, it addresses the global concerns of all women with AIS as well as those
of other intersex individuals. In addition to the chapter on AIS, there are
also outstanding intersex patient perspective chapters on CAH and Klinefelter
Syndrome.

This is the first time a leading medical textbook has included recommendations
for, and perspectives on, treatment written by patients. Michael Besser and
Michael Thorner, authors of the textbook, write that the patient authored
chapters are an "acknowledgment that patients are more knowledgeable about
their diseases and, properly, are more involved in determining their care."
The textbook is an exciting advancement in achieving better outcomes for intersex
individuals!

A UK group member who works in bio-informatics wrote an article in Dec 2000
titled Paternalism Doesn't Work! Education Does discussing the pre-occupation
of the medical profession with labelling people's sex and gender identity
on the basis of single chromosomes and genes. You can access the article here.

On 12 May 2001, the UK's New Scientist magazine (http://www.newscientist.com)
published a special issue on gender titled Gender; Why Two Sexes are not
Enough. It comprised five articles (Beyond Two Sexes, Boy Meets Girl,
Making Babies, The Gender Police, and Venus and Mars). A BBC Radio 4 'Today'
interview (http://www.bbc.co.uk/radio4/today/)
was broadcast on 10 May 2001 in connection with the articles and featured
Cheryl Chase (ISNA) and Gary Bulter (a paediatric endocrinologist from Leeds,
UK).

A UK group member was featured in an article, The Gender Puzzle - The
Worst of Both Worlds (http://www.sunday-times.co.uk/news/pages/sti/2001/10/28/stimazmaz02015.html?
or here) by Christine Toomey in
the UK Sunday Times Magazine, 28 Oct 2001. Also available via the Adrenal
Hyperplasia Network website (http://www.ahn.org.uk).
It features two people - one with CAH, the other with AIS - and discusses
shame, secrecy and the controversy over childhood genital surgery. The AIS
person featured is not typical (most people with CAIS identify as women).
The AIS Support Group had no official input into the article and was not keen
on the sensationalist titles/subtitles used, but felt that the article itself
didn't turn out too badly.

A book Intersex and Identity: The Contested Self by Sharon E. Preves,
was published in 2003 (Rutgers University Press). Sharon is assistant professor
of sociology at Hamline University, St. Paul, Minnesota . She interviewed
AISSG USA group members in 1998 and also wrote a chapter in Intersex in
the Age of Ethics (see above). This text is from
the jacket of her new book:

Approximately one in every two thousand infants born in the
United States each year is sexually ambiguous in such a way that doctors cannot
immediately determine the child's sex. Some children's chromosomal sexuality
contradicts their sexual characteristics. Others have the physical traits
of both sexes, or of neither. Drawing upon life history interviews with adults
who were treated for intersexuality as children, Sharon E. Preves explores
how such individuals experience and cope with being labeled sexual deviants
in a society that demands sexual conformity. By demonstrating how intersexed
people manage and create their own identities, often in conflict with their
medical diagnosis, Preves argues that medical intervention into intersexuality
often creates, rather than mitigates, the stigma these people suffer.

In a chapter called Seeds of Change the author has a section called
Emergence of Intersex Support and Advocacy Organizations which starts:

The Turner's Syndrome Society, founded in Minneapolis in 1987,
was the first known support group for people with atypical sex differentiation....

...A year later, in 1988, the mother of a girl with androgen insensitivity
syndrome (AIS) founded the UK-based AIS Support Group. The UK has convened
fall and spring weekend conferences since 1995, and many people from continental
Europe and the United States travel to attend the UK group's meetings... [she
then talks about the formation of the US, Canadian and other AIS groups, and
mentions the UK group's newsletter ALIAS]...

...In 1989 the mother of a child with Klinefelter's Syndrome founded the
US-based K.S. & Associates...

...In 1993 the intersex activist and scholar Cheryl Chase founded the Intersex
Society of North America (ISNA). Chase initially announced ISNA's existence
by publishing a letter to the editor in response to Fausto-Sterling's article
The Five Sexes in The Sciences (see above). In Chase's
letter, she indicated that hermaphrodites weren't mythological or fictional
characters and that she, herself, was intersexed and had founded and was president
of an advocacy organization for intersexuals called the Intersex Society of
North America. The society Chase referred to didn't exist yet. The organization
was actually formed out of her letter to the editor. Chase was hopeful that
by acting as though the organization was already in place, she would find
others who had bodies and medical histories like her own. In the signature
line of this momentous letter, Chase listed a post office box for ISNA, and
it soon began filling with mail from other intersexuals around the world.
ISNA published the first issue of its newsletter, Hermaphrodites with Attitude,
in the Winter of 1994, started bimonthly support groups in January 1995, and
went on-line with an Internet web site in January 1996.

[Sharon goes on to expand on ISNA's activities, and to talk about the formation
of the Ambiguous Genitalia Support Network (AGSN) in 1995, the Hermaphrodite
Education and Listening Post (HELP) in 1996, the Intersex Support Group International
(ISGI) in 1998 and others.]

Time magazine published an article on 1 Mar 2004 titled Between The Sexes
- More babies than you might think are born neither boys nor girls. Sorting
it out is a lifelong struggle by Christine Gorman and Wendy Cole (http://www.time.com/time/magazine/article/0,9171,1101040301-593551,00.html
(or here). It relates the experience
of the mother of an intersexed child and that of three adult intersexuals,
and discusses the changing attitudes within the medical profession.

All these clinicians (and a number of other chapter authors) have attended
our meetings as guest speakers. My chapter is titled 'Patients
and Parents in Decision Making and Management'. I was assigned this long-winded
title (in Feb 2001 - it's taken a while to publish): it wasn't my choice.

It's essentially an intersex textbook with a significant emphasis on psychological
care (and on issues such as psychological support for pressure dilation in
vaginal hypoplasia) with chapters by clinical psychologists like Lih-Mei Liao,
Julie Alderson and Polly Carmichael. There is a chapter called 'The XY Female'
by our old friend Cathy Minto and chapters by a number of internationally
known experts such as Garry Warne in Australia and Ieuan Hughes in Cambridge.

It's amazing to see how incredibly different in emphasis this textbook
is, compared with the ones that I and another group member surveyed for the
article "Reading the Words" in ALIAS No. 9, Autumn 1997. A lot has happened
in the last 5-10 years.

An article (http://www.haaretz.com/hasen/spages/534445.html)
with the above title, by Vivian Abu Raad, appeared in an Israeli publication
(February 01, 2005, Shvat 22, 5765). It tells the story of a young woman in
Israel who contacted the UK support group in late 2002, became a UK group
member and is now setting up a support group in Israel. She says: "I was
interviewed by Vivian Abu Raad. She is my friend and writes in Haaretz. I
thought this is kind of therapy for me and a push for the Israeli support
group".

If you compare this account with the personal story (Angel) on our site,
that she submitted when she first made contact with us, you can see how far
she has come, both in gaining knowledge about her condition and in confidence
in speaking out so as to help and educate others.

A book titled Intersex and Ethics was published in early 2006 by
Springer. It is edited by Sharon Sytsma who teaches philosophy at Northern
Illinois University in the US, covers a wide variety of disciplines in relation
to intersex and has chapters by experts from various countries. See flyer
for further information.

UK-based intersex researcher Iain Morland (www.iainmorland.net)
works with Lih-Mei Liao (clinical psychologist at UCLH, London) to run periodic
seminars on matters relating to intersex. Both he and Lih-Mei have written
chapters for Sharon Sytsma's book (see above). Iain's PhD is available online
at http://research.iainmorland.net.

A book called Intersex: A Perilous Difference by Morgan Holmes is
to be published (2007) by Susquehanna University Press. The author (see earlier
on this page) is an Assistant Professor at Wilfred Laurier University,
Ontario, Canada.

The Sex that Dare not Speak its Name by Emily Nussbaum, in Lingua
Franca (magazine for academic/university people), May/June 1999 (http://www.linguafranca.com/9905/intersexuals.html).
Features Cheryl Chase of ISNA, Suzanne Kessler, Alice Dreger and Anne Fausto-Sterling.

Hermaphrodites Press Surgeons to Quit Gender Adjustment on Infants
by Louise D. Palmer (http://www.medhelp.org/www/ais/pdfs/palmer-article.pdf).
Article that appeared in 26 newspapers and via the UPS Wire Service (1999).A useful summary of how anti-surgery pressure built up during the early-late
1990s (mainly from ISNA in the USA), what the main arguments were ,and how
doctors reacted. The time period, and the rising pressure on doctors, very
closely mirrors that associated with AISSG in the UK (in a parallel and largely
independent manner but with less emphasis on 'gender reinforcement' surgery
and more on the anti-secrecy issue and on providing multi-disciplinary care
with professional psychological support).

Intersexed Activism, Feminism and Psychology: Opening a Dialogue on Theory,
Research and Clinical Practice. Cheryl Chase of ISNA interviewed by Peter
Hegarty in the Feb 2000 issue of the journal Feminism and Psychology (http://www.sagepub.co.uk/journals/details/j0191.html
- if in N. America, enter usdetails instead of details).

The Gender Police. One of several articles ('Beyond Two Sexes', 'Boy
Meets Girl', 'Making Babies', 'The Gender Police' and 'Venus and Mars') in
a special gender issue of New Scientist magazine (http://www.newscientist.com
- do a search for the 12 May 2001 issue).

This novel by Batya Gur, first printed in 1994 (published by Keter), translates
literally as I Didn`t Imagine It Would Be This Way (although the English
translation of the title, given on the book itself, is After Birth).
It's about the life of a gynaecologist in Jerusalem and the impact an AIS
patient has on her personal life.

The website of The Institute for the Translation of Hebrew Literature says:
Batya Gur (b. 1947, Tel Aviv, Israel) writes detective novels and is a literary
critic for the Ha`aretz newspaper. She studied Hebrew Literature and History
at the Hebrew University and completed her MA in Comparative Literature. She
taught literature in high school before moving to the United States for many
years. Her book, A Saturday Morning Murder, has been televised. It
says Lo Kach Tearti Li is available in German (Berlin Verlag 1996,
Goldman Munich 1998). The authors other detective novels have been published
in English by Harper Collins, but not this novel (as of 2003), it appears.

In April 2000, we were approached by Alvin H. Felman MD, a retired pediatrician
and pediatric radiologist who said, "For the past several years I have been
writing novels. This most recent one, in which the main character has AIS,
is written but being edited". He provided a synopsis.
Please contact the UK group for more details.

Die Luftgängerin (The Air-Walker) by Robert Schneider. BT BEI
Goldman (pub). A German novel with an AIS heroine who is likened to an angel.
Obtainable from http://www.bol.de. A UK group
member in Greece said:

Some days ago I finished reading the book The Airwalker [Die
Luftgängerin]... It is written by an Austrian or Swiss author in German
(I ordered it from Germany!) and it is a very good one! ...This book gives
a very sensitive approach of the condition. B______ told me that she phoned
the author and left a message but he did not reply (strange, an AIS girlfriend
perhaps?).

...It is very well written and I found it really interesting that there
is also a policeman in the novel who learns about the condition of Maudi (the
name of the AIS girl) and he begins to understand that... also his elder sister
who died many years ago must have had AIS! The girl is presented as an angel
and a very good and emotional description is given of her psychological instability.
This author must have a really good idea about AIS and its psychological impact.
In Greece he became very famous with his last novel, The Son of Sleep.
I really hope that it is going to be translated in English so that all orchids
could read it.

You know, it gives you a strange sense about how 'normal the condition
can seem when you see a person with AIS being the main person in a novel of
400 pages!! I would love it if it had alredy been translated, I would give
it to friends (who do not know) and after that I could ask them what do they
think of it.

Middlesex, published in Oct 2002, is a novel (pub. Farrar, Straus
and Giroux in the USA and Bloomsbury in the UK) by Jeffrey Eugenides (http://www.jeffreyeugenides.com)
featuring someone with 5-alpha reductase deficiency. Reviewed on various sites
such as http://www.salon.com.

A UK AISSG member attended an interview between the author and Mariella
Frostrup in London on 9th Oct, broadcast live on BBC Radio 4's Front Row
programme (see http://www.bbc.co.uk/radio4/frontrow
- search on 'Eugenides'). The author explained that hitherto this type of
condition had only been described in fictional works in mythological
terms and that he wanted to write from the viewpoint of a real person. He
mentioned AISSG during the interview. The group member had sent him the group's factsheet,
c/o the interview venue, asking him to publicise the group.

Apart from some small inaccuracies and a few bizarre moments in the book,
the author seems to have done his homework, and it presents a good account
of what it's like to grow up with a strange inexplicable condition, and of
the attitudes of doctors and parents. It should help educate the general public
about such conditions. The main problem is his use of the term 'hermaphrodite'
to describe his character up-front in the book. All the book's reviewers picked
this up and propagated it. Buried deep within the text the more accurate (but
equally horrible and out-dated) medical term for such conditions ('male pseudo-hermaphrodite')
is mentioned. Having said he wanted to get away from mythological concepts
it's a pity he had to use these terms at all.

Eugenides published a short story, The
Oracular Vulva, in the New Yorker magazine (21 and 28 June 1999)
and which he seems to have used as the basis for one of the chapters in the
book.

Ilario: The Lion's Eye, published in Nov 2006, is a novel by Mary
Gentle (pub. Gollanz), a follow-up to her Ash: A Secret History.
A review in the Sunday Times (03 Dec 2006) said:

The year is AD 1428.... The narrator, Ilario, is a true hermaphrodite,
a man-woman, never entirely comfortable in either role. Forced to flee by
murderous parents, he/she goes from Spain to Carthage in search of an artistic
mentor. All that he/she wants to do is to paint: not in the symbols required
by the church, but views of places and people as they truly appear.

The first chapter features a graphically explicit sexual encounter,
which flags up the fact that this is most definitely an adult fantasy....
Ilario is more about gender than sexuality, and overwhelmingly concerned with
the meaning of true love. Love is the key theme -- not erotic or romantic,
but the unselfish self-sacrificing love we expect from parents.

AIS, and in some cases the UK support group, had some early exposure in
the national newspapers/popular magazines. Most of the newspaper articles
are not worth reading. The magazine articles tend, on the whole, to present
a more accurate and sympathetic picture. Those marked with asterisks (**)
relate specifically, or mostly to AIS. Note that the contact details given
for the UK group in some of the earlier articles are now out of date:

Born Withoutby Margaret Horsfield,
in She magazine, approx. 1983. Describes the progress of a young
girl (not necessarily AIS) in using the pressure dilation method to form
a vagina, under the guidance of the (then) Chelsea Hospital for Women.

The Five Sexes, by Jane Alexander (October 1993), New Woman magazine.

As Melanie grew up.......** in Take a Breakmagazine(26 Feb 1994). Article submitted independently of the group by one of
our teenage members. Did not mention support group.

X plus Y Equals Sexual Confusion** by Roger Dobson,in
The Independent newspaper (24 May 1994). Article written by medical journalist
Roger Dobson after seeing the British Medical Journal letters. Gave support
group phone no.

The Boy Sentenced to Live inside a Schoolgirl's Body** by Rachel
Trethewey, in The Daily Mail newspaper (31 May 1994). Article written on
the back of the Independent article. Gave support group phone no.

She's Like a Girl - On the Outside** in TV Quick (Jan 1995) -
article written by journalist with help of teenage contact mentioned above.

Is Honesty the Best Policy?** in The Guardian newspaper 'Private
Lives' section (16 Nov 1995) - response by one of our members to a letter
in the 9 Nov edition.

When Girls are Made of Boys**, by Emily Hohler,The Sunday
Telegraph (18 Feb 1996) - article by one of their journalists Emily Hohler.
Gave support group phone no.

Various articles in the national press (May 1996) coinciding with publication
of Michael Bloch's The Duchess of Windsor in which he speculates
that Wallis Simpson might have had AIS. 1) Was Wallis Simpson really
a Man? by Michael Bloch, Daily Mail (11 May 1996). As usual, the Daily
Mail employed a ridiculous headline and incorporated various medical inaccuracies.
2) An Outcast, Yes ... but a Man? by Hugo Vickers, The Independent,
Section Two (16 May 1996). The Independent article claimed that the speculation
was rubbish but seemed to be implying that the whole notion of AIS was fanciful!
Neither newspaper put their journalist in touch with the support group,
even though both papers had previously published articles about AIS (with
similarly stupid titles) in which they included our contact details. 3)
The Man who would be Queen? by Alan Hamilton, The Times Weekend,
(May 25, 1996).

I Thought I was the Only One** by Kate Rew, in Good Housekeeping
(June 1996). An article written using material supplied by an AIS adult.
Gave support group phone no.

A Case of Mistaken Identity** by Beverley D'Silva, The Guardian
'Women's Page' (29 Aug 96). Article written based on interviews with three
AIS adults. Gave support group contact details.

Just One of the Girls** by Simone Cave, in UK Cosmopolitan magazine
(Jan 1997). Article written without our knowledge; quite good except failed
to mention support group (in spite of fact that gynaecologist interviewed
for the article knew of us).

Why Clare's a Special Girl** by Juliet England, in Woman's Realm
magazine (14 Jan 1997). Article about founder member of the AIS Support
Group and her AIS daughter. Gave support group address (now out of date).

My 20-Year Sticky Patch by Caroline Hawkridge, in The Independent
newspaper (Tues 13 May, 1997). "At 36 and about to be married, HRT was
the last thing on her mind, But then Caroline Hawkridge found herself facing
a premature menopause after losing both ovaries". Mentioned AIS and
other conditions needing long-term HRT. Caroline later wrote an excellent
book on HRT (see Announcements) that
includes coverage of AIS and similar conditions.

The Third Sexby Jay Rayner, in Observer 'Life' magazine (1 Mar
1998). Article about babies with ambiguous genitalia and featuring quotes
from a gender psychology researcher and paediatric endocrinologist both
of whom know about the support group (but which the article failed to mention).

Coming to Terms with Questions of Gender** in The Express newspaper
(20 Aug 1998). Article by journalist in association with above researcher
and with some input from a group member. Failed to mention support group
in spite of promising to do so.

The Woman Who Decides if a Child is a Boy or a Girl by Melissa
Hines, in The Express newspaper (Thurs Aug 20, 1998).

Heterosex is My Hard Master - or Perhaps Mistress** by Germaine
Greer, in the Daily Telegraph newspaper's 'Weekend' section (Sat June 5,
1999). Greer has a gripe at the fact that we gave her a hard time over AIS!
See Debate/Discussions.

Why Should a John be a Joan? by Kathryn Jackson, in The Times
Higher (October 8, 1999). Article about Cheryl Chase (founder of Intersex
Society of N. America) in the higher education supplement of The Times newspaper.

Complications of Life by Petronella Wyatt, in The Spectator magazine
(18/25 December 1999). Childish and hurtful article
making fun of people classified by medicine as pseudo-hermaphrodites.

What Sex Are You? OK. Now Prove It. by Viv Groskop and others
in Eve magazine, May 2002. A UK group member took part. Gave our web site
address.

What Sex Are You? Are You Sure? edited by Ann Kent in Take a Break
'Autumn Special', Aug 2002. UK group had some input and excerpt from UK
group member's web story used. Quoted UK group's address and web address.

Review by AISSG UK of Middlesex (novel by Jeffrey Eugenides, see
coverage above). Book Reviews section in 'GIG Today'
(Winter 2002), the newsletter of the UK's Genetic Interest Group (http://www.gig.org.uk).

We're Proud to be Intersex** by Beverly Kemp in Now magazine (30
April 2003). Features the stories of two AISSG UK members.

I Didn't Tell a Soul, one of three intersex accounts in an article
by Theodora Sutcliffe** in 'Real' magazine (9 Sep 2003). Based on the story
of an AISSG UK member.

___________ by _____________** in Marie Claire magazine (to be
published _______ 2003). Features the story of an AISSG UK member. [Put
on hold]

I Was Lied to, But my Son Will Know the Truth by Emma Smith in
Woman's Own (http://www.ipcmedia.com)
magazine (17 Nov 2003). The story of 45 year-old Jeanne Hastings who has
PAIS and who recently adopted a young boy with mixed gonadal dysgenesis
from China.

Unnatural Selection by Anjana Ahuja in The Times (2 Feb 2004).
Discussion of recent scientific paper casting doubt on feminizing surgery
in XY babies with cloacal exstrophy together with a report on an intersex
conference in London on 29 Jan 2004 at which representatives from the UK
CAH and AIS groups spoke (www.timesonline.co.uk/article/0,,8123-986519,00.html).

We are Not What we Seem** by Olga Craig,
Sunday Telegraph (Review section), 29 Feb 2004. Article featuring two UK
families who were shortly thereafter (5 Apr) to appear in the Channel 4
'Secret Intersex' documentary. Unfortunately, the newspaper used a rather
sensational banner headline in the main section and failed to mention the
support group even though the participants had repeatedly asked the journalist
not to forget this. For a PDF image of the article (483KB) click here.
See http://www.theage.com.au/articles/2004/03/28/1080331000649.html?from=storyrhs
for a transcript on an Australian site. See History
of the Group for information about the documentary. See above
for an article, Trust Me, I'm a Patient, written in 1999 by one of
the fathers who appeared in the film.

My Doctors Didn't Know if I was Male or Female** by Lucy Welch
in Best magazine (best@natmags.co.uk),
16 March 2004. Features UK group member Louise who was to appear, with other
group members (2 families, see above), in the Channel 4 documentary 'Secret
Intersex' on 5 April 2004. See History
of the Group for information about the documentary.

Why I've never had a Real Relationship by Nick Cannon in Woman
magazine, 5 April 2004 (http://www.ipcmedia.com).
Article featuring a member of AISSG UK.

My Father Called Me It** by Beverly Kemp in Real magazine,
18 Feb - 4 Mar 2005 issue. Features one of the two AISSG UK members who
appeared in her April 2003 article for Now magazine (see earlier in this
list).

I Grew My Own Vagina by Helen Scully in The Guardian newspaper (11
March 2006). An AIS woman's account of her struggle with the psychosocial
aspects of her condition and of her successful use of pressure dilation to
create a vagina.

The Secret of My Sex by Sarah Graham in The Independent
newspaper (08 Aug 2006) under Health within the Extra section. "Sarah
Graham was 25 before she discovered what doctors had withheld from her:
that she was both male and female".

The following articles were in N. American newspapers/magazines. Those
marked with asterisks (**) relate specifically, or mostly to AIS:

The Missing Vagina by Noreen Nash Siegel, in USA edition of Cosmopolitan
magazine (1990), giving the early history of awareness of congenital
absence of the vagina and its treatment together with two women's stories.

Affronting Reason, by Cheryl Chase (1995?) in Third Wave Now edited
by Rebecca Walker, pub. Anchor/Doubleday.

Intersexual Healing: An Anomaly Finds a Group by Natalie Angier,
in the New York Times, Sunday Feb 4, 1996.

Sarah's Story("Doctors lied for years about her rare genetic
condition")** by Nancy J. White, in Toronto Star (July 28, 1997). Written
in association with a member of our Canadian group. Gave address of Canadian
group.

Veering off the Two-Lane Gender Highway** by Martha Percival,
in The Globe and Mail (April 14, 1998) Written by a member of our Canadian
group. Gave address of Canadian group.

The secret no doctor would tell me.** An anonymous US woman tells
her story to Judy Dutton in Redbook magazine (http://www.redbookmag.com),
March 2003.

Born Ambiguous,** by John Jurgensen, in The Toronto Star,
1 Feb 2003. The story of Angela Moreno Lippert who has PAIS. Go to http://www.medicinenet.com,
search on "androgen insensitivity" then click on link for magazine/newspaper
articles.